Tuesday, February 15, 2011

We've been home a week now and are doing OK on the new meds and with the new Milla. I've had a hard time getting back in the routine of giving meds several times a day so that's something I'm having to adjust to (it's been just at bedtime for awhile now). The new meds don't seemed to have reduced the number of seizures but Camilla's reaction to seizures these days can be shocking. It seems to be easing with each passing day but at first immediately following a seizure she would take of running, scream really loud(as if scared or in pain), jump up and down and clap her hands violently. It was really disturbing but thankfully it does seem to be getting better. Sleep is much better this time around with this med. The first night home she was up 8 times then we went a couple of nights getting up 3 or 4 times and now we are down to just 1 or 2 if at all.

I am to email Dr. Kim tomorrow to let her know how this past week has been. I look for her to begin the Lamictal later this week. We will go for an MRI March 7 and then back to Dr. Kim the week after that. Still looking at surgery sometime in May or June.

"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Wednesday, February 9, 2011

After all the tests, after all the hours, after all the tears, after all the prayers - we have direction. During the hospital stay Camilla was started on Banzel (a med that she's been on before but had to come off because she couldn't sleep on it) and we are rapidly increasing to a mega-dose over the next two weeks. We will also add Lamictal next week to hopefully gain some sort of control over the seizures-keep in mind she was already on four meds before the hospital stay. This effort with the meds is something that we are very doubtful that will help at all and when I say we I mean the docs too. Even if we see any improvement in the seizure activity we will most certainly be dealing with a number of side-effects (insomnia, disorientation, lack of motor coordination, stomach issues, etc...). The docs explained their reasoning as a 'last ditch effort' before surgery. It's one of the attempts that has to be 'checked off' before they will release you for surgery. So here we are, having to suffer through the next 3 months on all these meds as we continue to do more testing to prepare my baby for surgery. A long time ago Brandon and I decided to opt for less medicine, in exchange for more seizures, in order to have Camilla 'with us' as much as possible and not lost in a medicine fog or dealing with more side-effects than any of us could handle. So the next couple of months will be difficult but we are very glad that the docs are continuing to prep for surgery and not waiting to do so after the end of the 3 month med trial.

We will go for an MRI on March 7th and back to see the neuro again on the 14th. There will be a few more tests after that but with all things going smoothly Camilla's case should go to conference in late April or early May. This is when EVERYONE involved with Camilla's case (2 Neurologists, 2 Epileptologists, surgery coordinator, surgery consultant, 2 Neurosurgeons, etc...) will meet and Dr. Kim will present her case. She said these meetings usually take about an hour and after the presentation everyone will get a time to give their opinions on surgery - the good, bad and ugly for Camilla. THIS WILL BE A VERY IMPORTANT DAY! If she is approved then surgery will be scheduled within the month, so we are looking at May or June.

As we find out more details about surgery I will do a little more explaining of what will be involved, recovery and hopeful outcomes. I will also be updating on the side-effects of the med trial. Right now I ask for your PRAYERS; specifically for sleep and patience for all of us during the med trial, for ease and clarity for the testing to come, and for all of the people that will be involved with Camilla's conference. I will post the day and time of her conference as soon as we know so that we can all pray very hard during that time.

Thank you for your concern and prayers for Camilla. Your support and encouragement through this process has meant the world to us. Below are some of the last pics from our stay at Childrens. I'll try to post a few videos later-

Sunday, February 6, 2011

So I lied - this is my next post and I'm not at home. I thought I'd update on the madness that has ensued tonight. Today's first dose of Benedryl wore off about 5:00 and the maddening itching began again. We were having to hold her hands so she started rubbing her head on the side rails of the bed, pillows, us, everything. She calmned down long enough to begin playing and coloring again and we now know it was a cop out because a few minutes later she was shoving crayons into her head wrap to scratch her head! Needless to say, despite our best efforts and another dose of Benadryl, she completly tore out 8 of her leads and displaced several others. They just finished replacing the leads and re-wrapping her head - they woke her to do this - Benadryl makes her antsy and irritable - her head was still itching - are you getting the picture of why it took three adults to hold her down during this process? What a nightmare!!! And we were almost on our way home without one of these MAJOR MELTDOWNS/FITS!!! Please pray for a full nights sleep and being able to come home first thing in the morning - the neuro should be by about 8:00am - hope she gets the process rolling and we are on the road by noon. We have received many texts, calls and messages this weekend - THANK YOU ALL!

We are so ready to go home! Camilla's head is itching bad this morning with all of the glue, tape, electrodes and other gunk wrapped up in it and they had to redo her leads this morning which meant more of the above :( They are bringing in some benadryl to help with the itching. We have seen the neuro this morning already and will know more from her after getting test results tomorrow morning. Camilla is very restless so far today and has been fighting being in the bed. She has just eaten lunch and is finally settling down for a nap (a quick one I'm sure). After she wakes up we will be able to unhook again for about an hour so we plan to hit the activity room and walk aroumd a bit. Cici and Papa and Crosby will be here later to relieve Daddy who has to go to work tomorrow. Hopefully the rest of the day will be smooth and easy and tomorrow should be very busy until we get out at noon! My next post will most likely be from home :)

Saturday, February 5, 2011

Today has been the easiest day. We saw the neuro earlier and although there was not much to report it was a good visit. We were able to 'unhook' Camilla from the wall for about an hour around lunch and we took her for a walk around the hospital and to the cafeteria for a bite to eat. She was so happy during this time and she is doing so much better after being out of this room for a little bit. She napped and played well until passing out just a bit ago from exhaustion. Today was good-

So far this morning has been quiet and peaceful. She was up for several hours in the night last night (a side effect of the Banzel that was started yesterday) so she slept late this morning and is just finishing up breakfast and getting dressed for the day. They did have to redo some leads this morning and her seizures seem to be a little worse this morning but all in all she is pretty calm at the moment. We are waiting for the neurologist to come in most any moment and we will know more after talking with her. More to follow later...

Friday, February 4, 2011

Where do I even begin? The day started out with no eating or drinking due to the lumbar puncture scheduled for 8:00. That test didn't actually happen until about 9:15 but thanks to many prayers Camilla did not once ask for anything to eat or drink beforehand. We had to redo her leads this morning, she had pulled about 5 completely off and others were askew but she was really good this time - no meltdowns and she didn't even have to be held down! After the test at 9:15 she had a hard time coming out from under the anesthsia - she was really restless and was fighting hard. After waking up and finally eating we saw the neurologist who told us we would now be here till Monday. She started Camilla on a new med this afternoon and it's one they can increase quickly and see results by Monday but if you ask me her EEG already looks calmer after the first dose - still seeing MANY seizures though. We usually see 5-20 seizures in a day and we have always been surprised during these tests to know just how many she actually has that can't be seen - no different this go around - she's averaging at least one seizure per minute when she's awake. We did find out the results of the spinal tap and she was negative for Glucose Transporter Deficiency - bittersweet - it would have given us a reason for her seizures but the treatment would have been to go back on the ketogenic diet indefinetly which would be hard now for my little girl who LOVES TO EAT!

So now on to the next course of treatment - we started Banzel today along with the other meds she is already on and we will start Lamictal next week (we have tried both of these meds before B at 4yo and L at 9mo). If the addition of these medshasn't stopped her seizures entirely after 3 months we will do surgery. Dr. Kim believes that a Corpus Callosotomy will give her the best chance at freedom from seizures and SPEAKING! This surgery would invlolve severing the bundle of nerves (corpus callosum) that connects the right and left hemispheres of the brain - MAJOR. I won't even get into our emotions about surgery right now but I will let you know that this is not a surprise to us. It is something we have seen coming for a couple of years now when no medication, diet or even the Vagus Nerve Stimulator would touch her seizures. I will say this though - I can feel your prayers in many ways 1)I didn't almost throw-up today when Dr. Kim started talking about surgery 2)I have a very eerie calm when thinking about surgery now 3)I have a really amazing feeling that God is about to do something really special with Camilla and after 5 years of dealing with daily seizures I can say that whatever her future is 'It is well...'

To sum up the rest of the day - we are still dealing with the boredom and irritability of being in a hospital bed/room for 2 days now and we have 2 1/2 more to go. Thankfully though the grandparents arrived in full force today and Brandon and I were able to get a break. Please keep the prayers coming - we thank God for them everyday! Here are a few pics so far-

Thursday, February 3, 2011

Finally she is all tuckered out! What an unusual and emotional day for Camilla. I'm sure it is so hard for her to understand why we have to put her through such things but all in all she really does well with whatever we throw at her. She played and fought hard once we got her all hooked up and was really OVER the hospital bed by the time sleep came. She has a VERY small amount of freedom to walk about in the room but the wires aren't very long and the video only picks up about half of the room. Lumbar puncture will come first thing in the morning(hopefully) - they have already placed her IV and is NPO after 2:00 am. She is already bored with most of the toys and activities I brought and our backups (relief and activities) may not be able to travel tomorrow with the weather. So keep the prayers coming and please know that they are being answered - they have been all along:)

I cannot tell you all how much we appreciate your texts, comments, messages, calls, etc.. It means alot to know we have the support of our family, friends and church family! I didn't get to take pics during the hookup but if you're interested in the process and more of what this test involves you can check out the blog archive on the left side of the screen and go to August or September of 2009. Sleep calls so posting pics tonight is not gonna happen - maybe tomorrow?

PS she has been talking in her sleep while I have been posting - incoherent words but she is really telling a story and she is TOTALLY asleep I know this because I am watching her brain waves as she's speaking - WEIRD - I know right?

We arrived at Children's at 10:00 today and then had to wait until about 1:00 to get into a room - have you ever waited with Camilla for anything - NOT FUN! We had Camilla and all of our luggage that we had to keep up with for those 3 hours and it was hetic! But thank goodness we got here and got settled before the snow hit. It has been snowing like crazy and all the staff keep talking about is how the roads are closed and they will have to spend the night at the hospital - it's ok with us we the like the batch of nurses on this shift :)Hooking up the EEG was a chore this time, it took two of us to hold her while the tech attached the leads. It took about an hour and we only had one meltdown during that time (of course we had already had two during the wait). We are now in a room and Brandon and I are taking turns sitting with her and playing. We brought puzzles, books, bubbles, beans, stickers, play-dough, leggos, etc... Thanks Pam for sending that annoying book :) it does keep her occupied! She is VERY active and we are fighting to keep everything attached! Please pray for calmness and her to not get frustrated with us, the nurses or this bed. Looks like the lumbar puncture will be tomorrow morning. Pray for her as she will not be able to eat for six hours prior - this is a BIG DEAL for her - pray that the test is not delayed for any reason. I started blogging again because so many were wanting updates so please leave a comment so I'll know that it's helpful. Thanks for your concern and for your prayers - keep 'em coming! I'll try to post some pics soon!

Wednesday, February 2, 2011

Ok, ok, so I know it's been awhile but there's been alot going on! When I last left you I was about to leave work and expecting a little boy in May - well our bouncing baby boy Crosby Otto Smith made his arrival on May 7th, 2010 at 2:42 am weighing in at 7 lbs 10 oz. He is the BEST baby on this earth and he sleeps, he eats, and he poops and he does them all often and easy! Camilla and Crosby get along wonderfully but are more than a handful! Being a stay at home mom has not been the easiest thing I've ever done but it's one place that I know I'm supposed to be - at least for now!

One of the reasons I'm updating at this time is because Camilla is about to undergo some tests at Children's this weekend and I have had many family and friends ask about a way to get updates, not just for now but on her medical situation in general. So back to blogging I go - heigh ho heigh ho

We will be checking into Children's hospital Thursday morning and will begin a 72 hr EEG and will have a lumbar puncture and several other tests over the weekend. We plan to return home on Sunday. Prayers needed for calmness during tests (she has to spend all of her time in a bed), clarity of tests, results and course of treatment to follow. Thanks for your concern and your prayers!

Camilla's Story

Camilla is such a blessing! In April of 2006, at just 6 months old, she was diagnosed with Infantile Spasms, a very rare and devastating form of childhood epilepsy. Despite numerous medications, the Ketogenic Diet, a Vagus Nerve Stimulator and a Corpus Callosotomy she continued to have daily seizures until undergoing a grid/resection surgery in March of 2012. She is still challenged by severe developmental delay and she doesn't speak but this sweet, energetic and happy little girl amazes us everyday with her grace, her beautiful smile and her contagious laugh.